Things have changed a little bit since getting my new diagnosis two-and-a-half years ago. Life isn’t quite as easy for me. There are times where I'm not very well and I have to take to my bed.
When we want to go somewhere, I have to think more about where we’re going, whether I need to take oxygen or if I’ll need a wheelchair in case I get tired. But I suppose that’s small things in comparison to... I often think it could be worse.
The advice I would give other people is don’t change. Just keep doing things exactly as you have done. I think it’s important that you don’t give in to it. I feel that if I took to bed now I'm poorly, that’s really giving in to it. And I think if I’d done that I probably would be dead now.
I think just be open and honest and up front, and tell people the truth. Carry on your life as normal. Obviously there are going to be ups and downs; there are going to be times that are really hard. But you cross that bridge as it arises. You just have to live your life.
I am quite stubborn. I’m not going to lie down and give in to it. That’s how I am. When I’m sick, I’m very keen to get up out of bed and start doing things again. Much to everybody else’s dismay!
When I'm feeling really bad my Macmillan community nurse Mandy, is always my first port of call. She does exactly what I want. She knows that I'm very straight and to the point, and if I think that she’s getting a little bit ahead of herself sometimes, I’m like, ‘No, that’s not happening.’ You know, I tell her. I love that she’s there through all of it.
Sadly, Claire died in February 2015. We'd like to thank her family for allowing us to continue sharing her story, so others can benefit from Macmillan's support.